1. Date of presentation Name of presenter UK IBD Audit 3 rd Round Comparison of (Your Site Name) results against the National Results for Clinical Audit of Paediatric IBD Inpatient Care in the UK

2. Participation in round 3: 23 paediatric sites across the UK entered clinical audit data England = 17 sites Northern Ireland = 1 site Scotland = 3 sites Wales = 2 sites A ‘site’ typically constitutes a single hospital within a health board/trust. Where a health board/trust has more than one hospital offering independent IBD services they entered data for separate ‘sites’. Some institutions running a coordinated IBD service across two or more hospitals with the same staff took part as one health board/trust- wide site

3. Data was entered by sites onto a password protected audit web tool under the direction of a designated site lead, in almost every case a Consultant Gastroenterologist Data entered between 1 September 2010 and 31 August 2011 The results provide contemporary UK-wide data and all participating sites have received site-specific reports which will included local data for comparison against national averages (use this data to populate the ‘your site’ column in all following tables) The full National Report was launched on 21 February 2012 Publication of results

4. Key Results – Ulcerative colitis Paediatric IBD Care – Ulcerative colitis. Table (2) of National Paediatric Report UK Results v Your Site 2010 (page 7)

5. 2010 UK Results Your Site 2010 Were the standard Stool culture (SSC) and Clostridium Difficile toxin (CDT) samples requested in non-elective patients with diarrhoea recorded during the first full day following admission? SSC 70% (88/126) CDT 45% (57/126) SSC XX CDT XX Did the patient see an IBD nurse during the admission? (in non- elective patients) 71% (109/153) XX Did the patient have a previous admission in the last 2 years? (in patients with a pre-admission diagnosis) 61% (62/102) XX Was Prophylactic Heparin prescribed? (in non-elective patients) 11% (20/176) XX Key Results – Ulcerative colitis Table (2) of National Report UK Results v Your Site 2010

6. 2010 UK Results Your Site 2010 If the patient underwent surgery, was if undertaken laparoscopically? Non-elective42% (5/12)XX Elective43% (10/23)XX Was a PUCAI score recorded on Day 1 in emergency admissions? 20% (13/66) Median score = 65 XX Did the patient experience a thrombotic episode during the admission? 2% (3/176)XX Key Results – Ulcerative colitis Table (2) of National Report UK Results v Your Site 2010

7. Key Results – Crohn’s disease Paediatric IBD Care – Crohn’s disease. Table (2) of National Paediatric Report UK Results v Your Site 2010 (page 8)

8. 2010 UK Results 342 cases of which 288 were non- elective Your Site 2010 Were the standard Stool culture (SSC) and Clostridium Difficile toxin (CDT) samples requested in non-elective patients with diarrhoea recorded during the first full day following admission? SSC 41% (88/214) CDT 28% (60/214) SSC XX CDT XX Did the patient see an IBD nurse during the admission? (in non- elective patients) 72% (207/288) XX Did the patient have a previous admission in the last 2 years? (in patients with a pre-admission diagnosis) 52% (124/238) XX Key Results – Crohn’s disease Table (2) of National Report UK Results v Your Site 2010

9. 2010 UK Results 342 cases of which 288 were non- elective Your Site 2010 Was Prophylactic Heparin prescribed? (in non-elective patients)7% (24/342)XX If the patient underwent surgery, was if undertaken laparoscopically? Non-elective36% (10/28)XX Elective27% (14/51)XX Was the patient’s weight measured during the admission? (in non-elective patients) 99% (286/288) XX Did a dietician see the patient? (in non-elective patients) 81% (232/288) XX Key Results – Crohn’s disease Table (2) of National Report UK Results v Your Site 2010

10. 2010 UK Results 342 cases of which 288 were non- elective Your Site 2010 Percentage of patients aged 12 and over that were not asked about their smoking status 53% (136/259) XX Was the pubertal status recorded in 12 months prior to admission? (in patients aged over 10 at the time of the last outpatient appointment) 25% (59/237) XX Did the patient experience a thrombotic episode during the admission? 0.3% (1/342) XX

11. Key Findings – Ulcerative colitis & Crohn’s disease Ulcerative Colitis & Crohn’s disease – findings relate to key results indicated in Table(2): Paediatric IBD Care. UK Results v Your Site 2010 (page 8)

12. 1.Increase in paediatric IBD patients being seen by specialist paediatric IBD nurse 2.Significant increase in stool sample collection in UC patients 3.Prescription of Prophylactic Heparin although increased remains low 4.Only 20% of UC patients admitted as an emergency had a PUCAI score recorded on day 1 5.More laparoscopically or laparoscopically-assisted surgery now 6.Readmission rates in the two years prior to admission have fallen significantly in CD patients, with a numerical but not statistically significant fall also demonstrated for UC patients 7.The increase in inpatients being seen by a dietician would suggest that important dietary factors in CD are continuing to be given further emphasis in patient care Key Findings

13. Key Recommendations Recommendations for Paediatric IBD Care - IBD Services based on findings collated for Ulcerative Colitis & Crohn’s Disease as detailed in tables (2) of National Report (page 8)

14.  Implementation at a national level, of an agreed systematic annual review to avoid likelihood of routine data collection items such as smoking and pubertal status being overlooked  Local policy for thrombus prevention (including use of Heparin) in paediatric patients with IBD should be reviewed by each paediatric IBD service  Every paediatric patient admitted as an emergency with UC should have a PUCAI score recorded on admission and daily thereafter as a guide to the need for medical rescue therapy or colectomy  Local hospitals should develop a practice were testing for CDT is routinely carried out alongside tests for SSC in all stool samples sent for IBD patients admitted with diarrhoea  All paediatric CD inpatients should have growth and nutrition reviewed during their admission to ensure that any growth faltering is not overlooked Key Recommendations:

15. Key Indicator Data The table in section 5 (page 31) of the report gives named data in alphabetical order of participating site (divided by health board / SHA) These data items were agreed by the UK IBD Audit Steering Group as reflecting the questions of particular importance to IBD patients The combined data from all 23 sites are shown for comparison These results should be interpreted within the context of the fact that many sites entered a relatively small number of cases to the audit and therefore percentages should be reviewed alongside the actual number of cases submitted

16. Key Indicators How many cases were entered to the UK IBD Audit? Was the patient seen by a gastroenterologist during their admission? (this does not apply to patients who were admitted for either elective surgery or who were under the direct care of a surgeon) In patient with diarrhoea, was stool sample sent for Standard Stool Culture (SSC)? (SSC is a test to identify bacteria or viruses that may be causing an infection) Was pubertal status recorded in the 12 months prior to admission? (in patients aged 10 at the time of their last outpatient appointment) Ulcerativ e Colitis Crohn’s Disease Ulcerative Colitis Crohn’s Disease Ulcerative Colitis Crohn’s Disease UK Results 2010 Median = 8 cases Media n = 16 cases Yes = 147/153 (96%) Yes = 279/28 8 (97%) Yes = 88/126 (70%) Yes = 88/214 (70%) Yes = 136/259 (53%) Your Site Results XX Key Indicator Data

17. Key IndicatorsWhat was the smoking status of the patient NOT recorded during the admission? (only asked for patients aged 12 and over at the date of admission) Was the patient weighed during admission? (Crohn’s disease only) Was the patient seen by a dietician during their admission? (Crohn’s disease only) Crohn’s Disease CD Only UK Results 2010Yes = 136/259 (53%)Yes = 286/288 (99%) Yes = 232/288 (81%) Your Site ResultsXX Key Indicator Data

18. Summary of National Results These results highlight : Highly significant increase in total number of paediatric inpatients being seen by an IBD nurse during admission Readmission rates have fallen in both UC and CD between the 2008 and 2010 Deficiencies in the collection of stool samples for Standard Stool Cultures (SSC) identified in 2008 clinical audit report have improved significantly for patients admitted with UC and more steadily for those admitted with CD Laparoscopic surgery is more common in 2010 than 2008 with a significant increase in non-elective CD cases being undertaken in this way Rates of anticoagulation have improved for patients with both UC and CD Results highlight that there is work to be done by the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) to address poor levels of recording pubertal status of patients with CD; and also to encourage widespread adoption of the Paediatric Ulcerative Colitis Activity Index (PUCAI) in order to inform the management of acute UC

19. National Recommendation Action RequiredStaff ResponsibleProgress at Your Site 1. Every paediatric site should have a dedicated IBD/Gastroenterology nurse Where there is no IBD nurse provision at a site, business cases should be submitted examples of which are available through the IBD quality Improvement Project Shared Document Store Consultant Paediatric Gastroenterologists/Hos pital staffing and Business and Development departments 2. Every paediatric patient (aged ≥10 years, or showing signs of early puberty with IBD should have pubertal status recorded every 12 months Standardised medical assessment or self- estimation form to be used for all relevant patients Medical and Nursing staff working with paediatric IBD patients Action Plan

20. National Recommendation Action RequiredStaff ResponsibleProgress at Your Site 3. Local anti-thrombotic policy in paediatric patients with IBD should be reviewed and updated. Where no anti-thrombotic policy for paediatric patients exists, one should be developed. In sites where there is a paediatric anti-thrombotic policy, this should be reviewed taking into account the most recent evidence base. Likewise in sites without one, a policy should be drafted. Consultant Paediatric Gastroenterologists/H ospital Policy Departments 4. Every paediatric patient admitted with severe colitis should have a PUCAI score recorded on admission and daily thereafter/ in line with ESPGHAN/ECCO recommendations. PUCAI index scoring charts have been distributed to all registered UK IBD audit paediatric site leads. Medical staff should be calculating and documenting this score in the patient medical records as a matter of course Medical and nursing staff working with paediatric IBD patients. BSPGHAN should also promote its use in conjunction with ESPGHAN/ECCO acute sever colitis guideline Action Plan

21. National Recommendation Action RequiredStaff Responsible Progress at Your Site 5. Local hospitals should develop a practice where testing for Clostridium Difficile Toxin (CDT) is routinely carried out alongside tests for Standard Stool Culture (SSC) in all stool samples sent for IBD patients admitted with diarrhoea Discussion should be undertaken with local laboratory managers to explain the importance of ruling out any form of infection in IBD patients Consultant Paediatric Gastroenterologists/H ospital Laboratory Management Staff 6. Instigation of and enrolment into paediatric IBD RCTs The IBD audit will produce a list of proposed research topics for the paediatric IBD community to undertake. Alongside this the community needs to recognise the importance of RCTs in furthering the knowledge base for most effective treatment of these patients UK IBD Audit Steering Group/MCRN/BSPGH AN/All members of the local IBD Team Action Plan

22. Your 3 key areas for local change: Local key area identified What action needs to occur to facilitate this change? Who will be responsible? How and when will you review this action? 1. 2. 3.

23. Data entry for the biologics audit element of the round 3 UK IBD Audit continues. An interim report will be published in June 2012 Enter data for your IBD patients receiving biological therapy at: www.ibdbiologicsaudit.org www.ibdbiologicsaudit.org Sites are encouraged to access and contribute towards the Shared Document Store on the IBD Quality Improvement Project (IBDQIP) website: www.ibdqip.co.uk which provides tools that sites can use to implement change within their own IBD Service.www.ibdqip.co.uk The Future:

24. Acknowledgements Most importantly thank you to all of the people who worked within ‘Your Site’ towards collating and entering the data All members of the UK IBD Audit Steering Group For further information contact: ibd.audit@rcplondon.ac.uk